cry cry cry....do the ugly face cry....the boohooing!! I know you think it won't get you anywhere.....but sometimes we just have to...
its not a sign of weakness its just our bodies reacting to all the pain and suffering its going through physicaly and emotionaly....just let it out
I'm saying lots of prayers for you... hope you have a better day.. mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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You sound ok to me.....you make perfect sence to me....
It is very frustrating trying to talk and the words just don't come out the way they should...... I find that I can't even understand sometimes what the doctors are saying to me.... The brain stuff is very difficult and hard to explain.....and it all can be and is very scarey . You maybe depressed...but totally not stupid!!
Trying to figure everything out on your own can be all too much to handle....not that I don't think you could....you are one tough cookie but you need support from your doctors...not more confusion then you already have with your symptoms.....
Try to write down your questions....not for any particular doctor....just for yourself.....write down your symptoms...your feelings.... Maybe even write everything that has been going on since...hhhhmmm...Jan. or earlier???
Then maybe you will have a clearer view of what YOU want to know ....and then be able to talk to one of your doctors.
Keep posting or pm me....... Let er rip...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks m
Good idea to write down my thoughts. I think I started doing that yesterday or the day before & lost the paper.
I'll have to try again.
I think I may have to get back to researching LLMDs again. I don't think my present course is going to do me any good.
You are right, dealing with my present Dr. is actually causing me tremendous stress. I would likely do much better with a doctor that I don't feel I have to question EVERY SINGLE Tx, every step of the way.
It's just too much when I relapse & can't think. I've had enough of this relapsing BS!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I went back to my regular Ophthalmologist today.
He had received the letter from Dr.S.
The letter had stated that the normal MRI would indicate no CNS Lyme & no MS.
I found that statement disconcerting because, to my understanding, it WOULD NOT rule out CNS Lyme. I asked my Ophth for his opinion & he said he doesn't believe that it would either.
I also told him that, from what I've read, I would have a 50-50 shot of anything turning up Lyme on the LP even if there is active CNS infection.
He said he will leave it up to me whether or not to get the tests done. He said that a Dx of MS would not influence him to change treatment for my eye problems.
When he looked at the nerve, he said the inflammation had definitely gone down. There was a marked contrast between the nerves in both eyes previously and he no longer sees that.
He does believe that I had a bout of Optic Neuritis which is resolving and will likely continue to do so, albeit a bit slowly.
He is going to remove the cataract in the other eye. He said it should take about 10 minutes and I'll be able to see fine to drive home & go about my business the same day. Once I have vision in that eye, the resolving issue in the other eye shouldn't be so noticeable.
Now I wonder what my two LLMDs will make of the letter. Since the presence of Uthoff's Phenomenon used to be the means for MS Dx, I would hope that they wouldn't want to make me get the LP either.
Then again, I am a big pain in their butts, so they just might want to seize the opportunity to be a pain in mine!
Nah - I'm sure that if they try to make me have it done, someone here probably already has a collection of links to the studies that show they can't rule out a Bb infection because of negative LP.
MS-schmeMS, It's CAUSED by Lyme and we ALL know it. There's got to be NO WAY that any Dr with a clue would even SUGGEST putting me on the dreaded STEROIDS for MS. (at least not in person )
I'm alright, I'm OK. This too shall pass!!!!
Thanks everyone for all of your support while I was panicking over this. You truly ARE the greatest bunch of people!
Ali
Maybe his remarks were designed to educate without alienation. I do believe that I might have been OK just to stick with my regular Ophth's assesment, as it seems he knew EXACTLY what he was talking about.
I REALLY hope that my Lyme-illiterate PCP might learn something, about the potential for systemic damage from improperly Txd TBDs, from the copy she received. (10 days of Amoxicillin for "classic bulls-eye" (with head embedded, no less) & had no clue what Babesiosis was )
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
..
ali, thx for the detailed update from you; i've been wondering about you.
DO NOT DRIVE HOME AFTER CATARACHT SURGERY! my husband's cataracht surgeon/RN both state this plus it's in writing in all literature.
we live 5 minutes away; your eye will have the huge patch on it blocking VIEWING of traffic and peripheral ok! best wishes on it ali!
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posted
Good to hear that the neuritis is getting better!! I think you'd be REALLY angry and disappointed if you had an LP.
It would be one more big problem. UGH!!
Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Betty
I'll have to read the info packet that they gave me. I can't blow it up to large font like I can the computer type, so it will have to wait.
I could have sworn that he told me I wouldn't need a patch or anything because of the way it is done now.
He told me that they numb the eye with an anesthetic gel, give an injection in the hand of general anesthetic and then cut a 2.2mm opening, pop out the lens & put in a new plastic lens.
He said the whole procedure takes about 10 minutes & he did 14 of them yesterday before lunch.
****************
I just read the pre-op instructions. It says to make arrangements to have someone drive me home. How on earth did I get THAT mixed up?!!!
Thanks again, Betty! Where would I be without you looking out for me. Stuck at a surgical center I guess.
Ali
*****************************
I just realized something.... They said the reason for having someone drive is because of the anesthesia. Perhaps no patch, so I will be ABLE TO SEE on the way home(???) and I may have confused that to mean that I could drive. I'll bet that's what happened.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Good to hear that the eye is getting better.....even if its slowly....
.........and Betty was right... ...have someone drive you home....when you have the other eye surgery. It's amazing what they can do now....my mom had that done in both eyes...(one at a time )
are you going to do the Lp ? or did you not decide yet.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
TuTu, you snuck in while I was posting!!!
I think you are right about the LP! I hope that my LLMDs would agree that it's not a great idea. I think that, if they thought it would help anything, they would have asked me to do it already.
I really have to stop getting so freaked out by everything. I wonder how I got to be this way.
Maybe I read TOO much or perhaps still not enough?
I do hope the reevaluation of the IDSA guidelines will make some kind of difference in all the confusion and controversy surrounding these TBDs!
Can you imagine if we could get the 8000 members of IDSA to take TBDs seriously?!! IT might actually make a difference in all this, if some of them would open their eyes.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You sneaky people!!!!!
Hi mtree!
As far as deciding on the LP, I'M still against it. I think maybe I might call my LLMDs & make sure that they concur & then call Dr.S & tell him tough noogies. That's not very nice.
Maybe I'll just ignore it, since Dr.R said I don't have to & Dr.S. said I didn't have to go back to him, and hope it goes away.
I think that sounds like a plan. They'll have to catch me first!!!! LOL
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
Hi Ali- have to admit you lost me several posts back- but that is not necessarily your fault.
I have a short attention span.So I cut to the chase and zoom zoom zoomed to the end.
But it does seem as if something is getting better which is great. You seemed to have had a real scare-and that's scary in itself.
I have nothing really to add- except support!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Sorry Cobby,
I probably lost ME a couple of posts back.
I have decided today that I am NOT going to have MS. If I don't get the LP, and that's what they want it for, then I WON'T HAVE IT!!!!!!
Right? If they can't confirm it, they can't prove it. JUST LIKE LYME!!!! Na~Na-Na~Na~Na
Run, Run, as fast as you can - You can't Dx me, I'm the gingerbread man!!!
OK-I've officially lost it
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
not that I had it to begin with.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I'm with ya...I have decided today too that you do not have MS
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I've also decided that I WILL NOT have "chronic Lyme"!
I've decided that I WILL NOT have pain. I WILL NOT have confusion. I WILL NOT have memory issues. I WILL NOT HAVE VISION PROBLEMS!!! I WILL NOT be extremely fatigued. I WILL NOT have to get up & tinkle every hour on the hour during the night! I WILL NOT have any rashes. I WILL NOT have headaches. I WILL NOT wake up in a sweat. I WILL NOT be highly irritable. (I'm not sure if I left anything out, did I say that I WON'T have memory problems?)
I WILL NOT have any symptoms at all!!!!! (That should cover it! )
Heck, I don't even have this pain in my left knee!
Watda-ya-think? Sound good?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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mtree
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but you need support from your doctors...not more confusion then you already have with your symptoms.....![[Big Grin]](biggrin.gif)
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